Being treated for breast cancer, having a mastectomy and was wondering what people did for reconstruction?
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Thank you for responding. I'm still receiving chemo, and know looking into the next stage of course. All this information has been beyond helpful from people that has been through this. Doctor's don't something think of you as a whole body, so I very aware of this. I have kidney disease, but not in kidney failure so I look at protecting them also. I have Invasive lobular with dense very cystic breast, but it is in only one breast, but very difficult to see this type, only 20 percent of people get this, so that's why trying to figure out if a double mastectomy is better. Thanks you again for reaching out with your story, and do you have any feeling in that area, a nurse yesterday said you don't and never heard that?
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Kruzin – I did opt for the bi lateral mastectomy because the first time I was diagnosed with Stage 0 it was in my left breast and removed via lumpectomy with wide margins. Two years later I had Stage 1 invasive in the right breast. Of course prior to surgery I didn't know how bad the cancer was in the right but I went with the bi lateral mastectomy because I had both breasts involved already and figured it was just going to continue and I didn't want to take a chance of missing it (that lobular is tricky) and having even more issues down the road. I won't know if I resolved my problem for many, many years down the line but I wanted to put an end to the worry of having to take out pieces, bit by bit and not knowing if it might spread and become worse. My surgeons and oncologists at the time offered both lumpectomy and mastectomy as options and didn't hesitate to go with the full bi lateral mastectomy. I had pretty strong feelings that I didn't want the on-going surgeries or worry. I had cysts and benign breast lumps over the years and a couple of surgeries prior to the mastectomy, so I'd had enough. Following surgery my medical team did a full pathological work up of the breast tissue and they found pretty much what we suspected, which was one area of invasive lobular carcinoma, LCIS and DSIC and microcalcifications throughout both breasts. With that much tissue they can do a lot of tests and get tons of information on exactly what is growing. In my case, everything was growing in there and it wasn't good. I could have found just that one area and then perhaps regretted my decision but I don't think so. For me it was a matter of being the most aggressive I could be to remove the potential for cancer in the future. The mastectomy isn't really a very difficult surgery (I didn't think). After a couple weeks and good self care and follow up care you feel pretty good and within a year I was feeling pretty much like my old self.
I'm so glad you listened to your feelings, and it worked out for the best! I'm going to talk to my surgeon about this, but she sounds like I should just do the one, but we'll see. It's different when someone doesn't have this to say, and this is a business to make money. But I'm doing lots of research, and you've helped so much and I appreciate lots
I had a double mastectomy with expanders in February 2016 followed by chemo. Due to the aggressive grade of my tumor (grade 3; triple negative), my doctors advised waiting a year before having reconstructive surgery. In March 2017 I had DIEP flap reconstruction and am very pleased with the results. I chose DIEP flap because I didn't want any foreign materials in my chest and I was told that implants can cause one to feel cold (and I already have cold sensitivity). As someone mentioned earlier; it is critical you have a highly skilled cosmetic surgeon perform the procedure as it does involve micro surgery in order to connect a blood supply to the transported tissue (be sure to interview several doctors before making a final selection).
I had breast cancer in my left breast. Decided to do a trams flap surgery. I have regretted the decision every day since. My breast is great but my stomach has given me trouble. It feels as if it is pushing out from the inside out most of the time. I have swelling almost ever day. I look like a 55 year old that is pregnant. I have no feeling in my stomach or cannot feel anything when I go to the bathroom. I have to physically look to make sure I am done urinating. Would love to have my feeling back so that I could enjoy sex again. Mine was done in 2011 and because the mesh collapsed and I had to have three surgery to remove and add another mess to my stomach hoping it would be better. That is definitely why I have no feeling in most of my body. I do have discomfort in my left side. It is very discouraging can not do hardly anything for long. Have to rest seems like I am tired all the time. Have discomfort in my right side because it seems like it Kinks. I too was told that it would be like I had a tummy tuck and it is not at all like this. Frustrated most of the time.
I don’t have the same issues you are dealing with, but I have learned a lot about lymphedema since I developed it in my left arm due to my mastectomy/axillary dissection. You may have it in your torso/stomach region (very common after those surgeries) causing your swellings. It causes other problems too but swelling is what people see. Google “Lymphedema Education & Research Network” and “National Lymphedema Network” to find out more. It is manageable. I use active massage sleeves from SolideaUSA because they are more comfortable than traditional compression garments. They have items that would work for your torso/abdomen too. I can somewhat relate to your other issue because unrelated to cancer, but to fix pelvic floor prolapse, I had a hysterectomy (plus tubes and ovaries removed) last summer. The doctor who came in to do the reconstruction put in a mesh mid-urethral sling for stress incontinence prevention. He put it in too tight and I could not urinate at all. I had to learn to self-cath. A month later he went back in for a “revision” ( he cut the sling to loosen it). The reconstruction failed, and the “revision” only helped some. I could only urinate standing up while simultaneously leaning over! Six months later I had the reconstruction redone with a different doc at a nearby large teaching hospital. I still have issues with urinating. Things just don’t work/feel like they used to. Yes, I too have to really pay attention to things because the normal sensations are gone.
I did consider DIEP flap surgery, but I was too scared of any of the other surgeries that used muscle tissue to form the breast mound to even consider them. I kept thinking it would create a different set of problems, which is what seems to have happened to you.
Anyway, good luck. There are a lot of us out here! : )
I re-read your post and wanted to relate what kinds of sensations I was left with after my double mastectomy. (The mastectomy itself wasn’t hard, and not even particularly painful. After I was home I didn’t even need to take Tylenol. I did end up with one drain for six weeks, which was frustrating. The surgeon removed it only because six weeks was the cutoff for him and he said I would likely form a seroma— which I didn’t… I think the drain could have been removed a month earlier with no issues.) I have feelings over my entire chest area, including around my scars. There have been a few times I’ve had an itching on one or both sides, which I just gently rub because I never scratch that area anymore— I don’t want to damage the skin. Especially my irradiated side. I do have an area on my torso just under my armpit without much sensation on my right side, and on my left side (this is the side that had cancer, and I also had an axillary dissection with 20 lymph nodes removed), my arm pit, a little bit under my armpit, and the back side of my upper left arm have no feeling at all. I have to actually watch when I apply deodorant on that side to see if It’s getting where I want to put it LOL.
As far as feeling in the mastectomy or armpit area….I fared pretty well. I was lucky with few lymph nodes removed. There are lots of nerves in your armpit area and I suppose they get messed up some during surgery, causing either pain or numbness. My chest wall has no pain or tightness. I worked very hard with my massage therapist and PT to get the best recovery possible. I have complete movement of my arms and chest and no pain (thank goodness). I do have some areas that feel different and have little sensation or different. Sometimes, even now I get odd itching across my scar line and I'm hopeful it will go away. But, I also have some weird rash that's going on bugging me for about 2 years. We haven't figured it out yet…that could be the itching. Comes and goes.
I just hate that you are having issues for so long. Back in 2004 I made the decision to have a mastectomy with reconstruction. But I just didn't feel right about the tram flap. I cannot pinpoint why, but it troubled me, so I decided to research other options. At the time I was a member of an online support community on FORCE (Facing Our Risk of Cancer Empowered). After much discussion, research, and recommendations from the folks of the FORCE group, I chose to travel to New Orleans to meet with two different doctors who were doing a relatively new (at least I had never heard of it) reconstructive procedure named DIEP). I chose Dr. Scott Sullivan and Dr. Frank DellaCroce at the Center for Restorative Breast Surgery in New Orleans (www.breastcenter.com). I highly recommend this fine group of doctors. I have never ever regretted this decision and to this day still believe I made the best decision of my life. I truly believe you won't be disappointed. It's worth investigating and even going for an interview visit if you so choose. I don't want you to have to go through this any longer.
I opted not to do reconstruction and I'm happy with my decision. I got the prosthetic and still haven't worn that even…..I'm about 3 years out from the bi lateral mastectomy. Of course, I am now 60 years old and I didn't want the extra surgery. I also mistakenly believed that it would be harder to find cancer if it came back but that isn't true from what I now know. The upside of no reconstruction for me is that I don't have to wear a bra or shop for a bra. I was never a fan. I also found the pain from the bi lateral very manageable and the recovery and healing time was much quicker than I expected. The downside is that at first my chest appearance was lumpy (not in a good lump way) but scar revision surgery for my lymphedema made my chest wall much better looking under clothes (less lumpy). The other downside is that you have to revise what you wear slightly….V Necks are pretty much out or anything low cut and sometimes I feel like I look like a giant pear (small or top and ever growing toward the bottom). But, I am very comfortable and everyone says they can't really tell I don't have breasts. I don't wear tight tops….I'm more 'flowy' now.
It's a big decision but remember………..you don't have to do the reconstruction right away or at the same time as the mastectomy. You can take your time when you're not also thinking about breast cancer and do it later. I know women who have done all three – immediate reconstruction, reconstruction later and some no reconstruction.
My breast cancer was invasive ductal in the left breast. I chose double mastectomy with reconstruction with expanding implants. An MRI showed an area in the right breast they wanted to check prior to surgery. However I decided I had chosen double mastectomy and did not do additional testing. Blessed be to god I chose the double mastectomy. A second cancer (invasive lobular) was found in the right breast. Borders were wide and lymph nodes clear. No chemo or radiation needed. 6 months after surgery I had my second surgery to replace the expanding implants with regular implants. I am very pleased with the results. I have a possible final surgery where Oscar Manrique (my plastic surgeon) may perform liposuction to add my own fat around the implants (to add fullness). I did NOT do nipple saving. I believe 10-15 percent become necrotic. I chose NoT to take the chance of losing the reconstruction due to a possible nipple saving. I will be getting tattoos in the future. I feel blessed to have done my surgery at mayo. My surgeon, the nurses the care team and my plastic surgeon have been beyond wonderful!! My reconstruction simply looks like a breast lift would look (minus the nipples). I will be praying for you. So many decisions to make. Hugs.
Hi @kruzin – I don't know if I'm too late to post my experience as you may have already gone ahead and done your surgery. But, if not,
I wanted to share my information with you, if it might help you.
I just had my bilateral mastectomy with reconstruction less than a month ago. I had biopsies in both breasts. I learned one breast had cancer the other tested out benign. The diseased breast had several large masses that all tested malignant and a lumpectomy was not deemed 'ideal' due to the amount of tissue removal involved so a full mastectomy was indicated for that one breast.
I am a research nut and did copious research on the subject and also had 2 consults with the breast surgeon and 2 with the plastic surgeon before deciding. I also spoke with my spouse, 2 children and daughter-in-law who's a nurse. During my weeks of contemplation and research, I subscribed to MedScape and read many of their published medical studies on mastectomy and breast cancer, including survival rates, surgery options, decisions made by patients who chose a particular option and comments from nurses and surgeons. I also searched every article I could on the internet and read many patients' comments.
In the end, I decided to remove both breasts and do immediate implant placement in both. I knew I wanted reconstruction as I would be too depressed otherwise. Mental health is equally as important as physical health and should be weighed as carefully, in my opinion.
My reasoning for doing a bilateral mastectomy and immediate reconstruction rather than just doing one breast is as follows:
* If both were done at once, the plastic surgeon would be able to make both breasts match closely, utilizing the new Alloderm artificial skin and identical silicone breast implants.
* I currently have excellent insurance and who knows what I may have years from now if the healthy, remaining breast were to develop something.
* I will never be younger than I am now, and my chance of a good recovery should be better now than years down the road (if cancer were to develop again).
* I would have one time off from work, one (longer) procedure day, one hospitalization, one anesthesia, and one recovery.
* Both breast gone = no further mammos, MRI's, no chemo, no radiation, (hopefully??) and no further worry about the other shoe dropping with the remaining 'healthy' breast developing something down the road. I have read how women who have cancer in one breast must go in and have any remaining breast tissue looked at and poked and prodded yearly for the rest of their lives. I wanted to avoid that if I could. Who needs more stress and worry?
* In addition, my healthy breast had been banged up pretty good with a stereotactic biopsy and had developed a large, hard lump and depression at the point of entry. I felt that it was now injured and may be more susceptible to getting cancer (gut feeling) which further directed me to going forward with both mastectomies.
All-in-all, I am currently glad I chose as I did, however I am still in recovery and may come to a different conclusion later, but I'm hoping for the best!
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